Good Intentions are Not Enough

Background

In 1985
medicine reporter Lillian Newbery's article on
"Genetics to Advance Cure for Blindness" appeared in The
Sunday Star. It remains typical of its genre, and the points
made in my following article, written in 1985 in response to it,
appear to retain their validity three decades later (March
2015). As far as I recall, if submitted (presumably to The
Star), it was never published.

Sometimes, with the best
of possible intentions, we achieve the very opposite of what we
set out to achieve. I will suggest here
that the reporting of some of the activities
of the mission-orientated agencies which support medical
research in Canada may actually be impeding progress towards
finding treatments for their diseases of interest. As an
example, I will discuss an article entitled “Genetics
to Advance Cure for Blindness” by
Lillian Newbery which appeared in The Sunday Star (28th
April 1985). The article happens to concern the Retinitis
Pigmentosa Foundation.

The article begins by
reporting that scientists are on the verge of finding a genetic
marker for the hereditary disease retinitis pigmentosa. This will
allow the detection of the gene in disease-free carriers, thus
facilitating genetic councilling. The article points out that
further work could lead to the identification of the gene causing
retinitis pigmentosa and, through this, the discovery of the defect
that causes the disease. This is exciting reporting which probably
states quite accurately the current state of research on retinitis
pigmentosa. There is little hyperbole and little to disagree with in
Ms. Newbery's article so far.

However, on reading on, we
find the following statement:

"...
in 1982 the Medical Research Council of Canada, the federal
granting agency, allotted little more than $1.5 million
to all eye research and less than $600,000 to projects related
to RP. In the same year, the Retinitis Pigmentosa Foundation of
Canada contributed $200,000 to research, one third the total
given by Ottawa." (my italics)

To the average reader of
The Sunday Star, this implies some criticism of the extent to
which Ottawa is supporting eye research. The major contribution of
the MRC to the advance being reported is not mentioned. With the
very best of intentions Ms. Newbery is pressuring the MRC to give
more funds to eye research. Similarly, by multiple avenues, others
with interests in a particular disease are pressuring for their
disease to receive more MRC funding. At face value this seems quite
laudable.

However, there is a different
viewpoint. The discovery of a genetic marker is an important and
logical step in the understanding of retinitis pigmentosa. Having
reached this point, we can look back and ask what chain of events
led here? What discoveries had to be made before this discovery
could be made? Did the Retinitis Pigmentosa Foundation support those
prior discoveries? Or was the Foundation funding research which,
with hindsight, can be seen not to have been so timely as the research
which made possible the discovery of genetic markers?

Before genetic markers could
be found for various diseases, there had to be fundamental advances
in molecular biology and genetics. Progress in these areas was
particularly spectacular in the 1970s resulting in the development
of recombinant DNA technology. It was this technology whch opened up
new approaches to disease. It was the MRC, not the RPF, which made
the major contribution to this area. The mission of the MRC is to
advance the understanding and treatment of disease. The MRC is no
less concerned about retinitis pigmentosa than the RPF. However, the
MRC recognized that the time was not yet right for a direct attack
on the disease. Accordingly, it placed high on its list of
priorities the funding of basic medical research to establish a
knowledge-base for a logical and orderly attack on specific
diseases.

Looking back on this in 2015
it is sad to see both how little, and how much, has changed. How
little, because the quick-fix obsession continues to heavily
influence funding priorities. How much, because private funding
sources (e.g. the Gates Foundation) are increasingly getting into
the field. The marketeers have moved in! Collossal flows of funds
in their direction pull away skilled technicians and laboratory
space from those most competent to attack the problems. Of course,
having made their billions by their early 30's, the healthy tech
billionaires' prime concern is their own demise. Professed anti-aging
researchers reap a rich bounty! For more on this see Ariana Eunjung
Cha, Magna Jen-Louis and Eddy Palanzo "Tech Titans Latest
Project: Defying Death" The Washington Post, April 4, 2015.

Donald Forsdyke, April 5 2015

Vannevar Bush, who got the mission-orientated agencies started in 1945
(Click Here)
must be weeping!